Every child his or her own pace of development, but there are some definitive signs that indicate a deeper problem and warrant an immediate medical consultation.

We’ve compiled a list of generic developmental delays/issues that all parents must be aware of to realize that their child needs help. Please note that these signs do not necessarily mean that your child has brain damage or mental health issues, but if you find yourself agreeing to the issues listed below, you must see a doctor right away.

There are some signs that are big red flags in themselves. Even if the child does not show any other symptom, this one symptom calls for a consultation. Such issues have been marked with an asterisk sign (*) in the list below.

If, god forbid, your child demonstrates these delays, and you need help/guidance on the next steps, feel free to reach out to Tamahar via our FB page, website or the contact form given on this blog. You can also visit us our centre at Malleshwaram, Bangalore. (Near Malleshwaram Railway Station)

SIGNS OF DEVELOPMENTAL DELAY

Pregnancy

Complications during the 9 months of pregnancy.

Excessive vomiting etc, even after the 4th month of pregnancy.

Baby not moving adequately inside the womb till birth.

Delivery

Pain and contractions before the bag burst and the water leaked.

Caesarian delivery due to problems during birth.

Baby did not cry soon or right after birth.

Age : 0-1 year

Baby excessively quiet or cranky in the hospital after birth, or continued to be quiet or cranky in the next 4-5 months.

Baby unable to suck/breast feed in the days following the birth, or doing so with difficulty.

Baby had breathing difficulty or a seizure episode soon after birth/stay at the hospital.

Repetition of such problems after discharge, at home.

Baby did not feed adequately.

Baby did not pass urine easily.

Baby not looking at the mother and the familiar faces after few weeks.

Does not smile at them, hold on to the mother’s finger while feeding, settle down comfortably when picked up.

Does not start holding up his/her head, roll over, reach out with hands, kick feet in air, laugh, gurgle, be startled by loud sounds or understand when scolded.

Does not come up to sitting independently, stand up, take a few steps.

Does not babble.

Does not want to convey something when talking – not saying something meaningfully, but just randomly repeating words without any purpose.

Does not enjoy songs/nursery rhymes or does not want to join in on the songs.

Does not look at books/pictures.

Does not point at things.

Age : 1-2 years

Baby not comfortable with strangers and familiar people alike after 1 year of age.

Not responding to command.

Use of words restricted to 4-5 keywords.*

No speaking in phrases.

Falling down often.*

Poor eye-hand coordination – unable to throw a ball in a bucket at a distance.*

I have been around in the disability sector in some form or the other for about 3 decades now, and yet, when I am asked to talk about it, I never know where to start. There is just so much going on in the sector at every conceivable level that the “relevant” bits get lost. For me, it is all equally important and it is all necessary to know, if you want to understand the sector at all.

When it comes to childhood disability specifically, India is in a critical state. This section of society is under-represented, largely ignored, misunderstood and mistreated. Even when they become part of the bigger narrative, the point under discussion is the nomenclature – do we call them disabled or differently-abled? Brain damaged or special? The conversations that will actually make a difference to them happen behind closed doors – so what if the child is not normal? What about his/her right to a good life, an education and employment? What is the right curriculum or treatment for them? Who will govern the standards of working with these children?

A report by the World Health Organisation states that out of every 100 children in India, 1 or 2 have special needs. Considering the population of India, this comes to a whopping 12 million children, which does not include the unreported or undiagnosed cases, children with rare diseases, autism, and so on. When you come down the socioeconomic ladder, the numbers are scarier. It’s a known fact that the likelihood of disability is higher in the poorer strata of the society. Going by the 2001 census, of the 9.4 lakh disabled individuals in Karnataka, 6.7 lakh of them reside in villages.

Having said this, I have been extremely fortunate for having been given a chance to work and learn in this sector. Some of my learnings are as mentioned below.

Dismal state of infrastructure and amenities

Although there are millions of children with special needs in India alone, there are very few centers which cater to children with developmental delays and especially for those in need of early intervention programs. This makes it difficult for parents to make equal opportunities accessible for these children. Especially, in backward areas, due to lack of sufficient right resources, this becomes even more difficult. Secluded therapies and services make logistics and holistic treatment difficult. There was no single place which would provide all services. Even if there are few special education centers, not many people know about them.

There is no single standard solution or therapy

With a multitude of symptoms constituting the indicators of developmental delays, there cannot be a ‘One Size Fits All’ solution or therapy to treat children with special needs. In addition to developmental delays, children with special needs can also have a combination of other medical conditions and when there are thousands of disorders that a person can get, a generic approach definitely cannot work.

Families of children with special needs are neglected

There is no respite for the overburdened parents, especially the mothers, being the one responsible for taking care of the child 24×7. Parents and families of these children with special needs are hardly provided any kind of support at the social, emotional, and financial levels.

The sector does not realise the importance of providing families as much training and support as the child needs. When families are trained to understand the condition of the children, they can support them better.

Selective blindness towards disability issues

The concept of pitying the differently-abled has been a part of the fabric of the Indian society since eternity. So, there is considerable hesitation when it comes to interacting and mingling freely with these individuals. In the process, the individuals and their families often end up being isolated by society and therefore face a lot of stigma on a daily basis.

In addition to the social stigma, families also have to deal with financing the medical treatments and therapy sessions. This can be mitigated to a certain extent by availing the financial schemes made available by the government. There are other, non-financial resources as well, provided by the government. However, the awareness levels of this is quite low among the families.

Apart from the above mentioned points, there is insufficient human resource who can be trained to work as special educators. Additionally, the absence of a central data repository makes it difficult for organisations working in the disability sector to reach out to those in need.

Denial is a bigger problem than awareness

In cases of brain damage or mental disorders, symptoms are quite ambiguous and hence brushed off as general misconduct of children. Parents find it difficult to accept the fact that their child is differently abled or has special needs. This could be attributed to the huge stigma associated with the term disability. The first step would be to work towards decreasing the stigma and encouraging more conversations and support groups. There is an entire generation of lost children – an entire section of population hidden in hearts of the parents who deny their condition and in the mind of the society which rejects it.”

Inclusion is a two-way street

It is the responsibility of the disability sector to create awareness among society about ways in which differently abled individuals can be integrated into the mainstream community. At the same time, it is essential to prepare these individuals to be capable of being a part of the mainstream society. This way, both sections of society work towards bringing about inclusion in as many aspects of daily life as possible. Eventually, the end goal of inclusion should be to empower the differently abled and help them aspire for a life where they are treated at par with the rest of the community.

Tamahar works towards bridging this gap and helping individuals with special needs become a part of the mainstream society. To bridge this divide is my dream for Tamahar. That I help my children come halfway and I help the society meet them in the middle. Help them meet halfway.

Lalith is a father of two children with Sanfilippo syndrome, both enrolled at Tamahar. Below is one of his blog posts, where he shares his family’s story and his hopes for the future of research.

Sanfilippo syndrome (MPS III) has become a way of life for me and my wife. As parents of two children with this deadly disease, our time is spent in a mixture of living life to it’s fullest and at the same time being very anxious for any signs of regression.

We have a daughter who will be 10 years old in a couple of weeks and a son who is seven years old. My daughter’s birth and the subsequent years were sheer bliss. Things only became concerning when we noticed that her verbal capabilities did not pick up. Visits to various doctors yielded a common answer and it was that she had ADHD (attention deficit hyperactivity disorder). We were assured that a few different therapies would mean she would be fine. But that was not to be. At this point in time our son was born. We were completely ignorant of what my daughter had and had no way to know that the same condition would also affect our son.

Even being in a city like Bangalore, India, that prides itself in being technically advanced and providing access to the best healthcare, it still took a few years for us to arrive at a diagnosis. My daughter was six years old when the Sanfilippo syndrome diagnosis was confirmed. Life suddenly looked different. I can still picture us literally praying for a miracle while the rest of the world seemed to be nonchalantly proceeding ahead as they were blessed with a normal life. The fact that there is no medicine to cure them was made even worse when we were told that their quality of life would deteriorate. There was no choice but to push ourselves out of this attitude of feeling victimized and to instead look towards hope.

I started reaching out to organisations working for kids and caregivers affected by rare diseases. The Organisation for Rare Diseases India (ORDI) is playing a big role here. Knowing that there is an organisation fighting for the cause is reassuring. Similarly there is a special school called Tamahar where my kids were admitted and they have been a source of immense support.

Encouraging news from research companies like Abeona Therapeutics and Lysogene has given us hope. But when we see our kids crying or laughing for a reason we cannot figure out, see them running and suddenly fall down, or see them looking up to us with a pale face when they are hungry as they cannot verbally convey it to us; our hearts sink. We just cannot wait for a treatment that can cure my children and change the lives of our entire family.

I look to the Sanfilippo research community to enable me in getting access to the treatment in form of gene therapy for my kids. As a never-say-die parent, I make myself completely available to anyone who can help me in this endeavor and look towards all of you for your support.

Did you know that it takes 200 litres of water to make one 50ml disposable paper cup?

Did you know that the long hot showers you enjoy use about 20-22(or more) litres of water per minute?

Did you know that simply by the virtue of eating in a big plate, we end up taking more food than we intend to eat and end up wasting food?

We did not, really. Then we met Mr Niranjan Khatri, who dropped by at our centre for a talk. What started off as a session on sustainable living turned into a dialogue on water conservation, mindful living and eco-friendly lifestyle, with quite a few amusing tidbits of facts and anecdotes thrown in. He also taught us the Inclusive Applause, a thoughtful practice that considers as well as includes hearing and speech impaired individuals!

Mr Khatri is the Founder and Principal Consultant at iSambhav, a sustainable development training organization that enables people to optimize their lifestyle and processes by teaching them eco-friendly practices and providing tools to do the same. Check out their website here.

In a style reminiscent of the 90’s phenomenon “Potli Baba”, Mr Khatri pulled out one story after the other from his own vast experience, while we sat there, spellbound and listening like curious little children. It’s really difficult to put all of them together in the same basket and call it one article, so we’re just gonna list it all out for you.

Water Conservation

Although there many large-scale operations to conserve water, most of us do not make any effort to save water in our day-to-day lives. It might be because we don’t know how to, or maybe because we don’t care. The way drinkable water is drying up and the amount of wastage, it is very probable that the next war be fought for control of water!

There are regions in Rajasthan which get 200 mm of rain annually. The water is collected in small, shallow wells with a pipe installed in the middle. Over days, the morning dew settled on this pipe eventually trickles down and collects in the well. This water is then rationed to the villagers, 1 litre for every person. (Btw, that is how much we use every time we wash our hands under a running faucet). If you ever visit these villagers, you will be offered a glass of camel milk, since that is available in abundance. A family’s stored water is their wealth and is treated like it. The water containers are locked in a safe and opened only for VIPs, and offered in very small portions.

Similar practices are followed in South Andes regions where rainfall is just as scarce. A vertical net is erected with an open drain pipe below it. The dew accumulated in the net falls into the pipe, which leads it to a community tank. This water is then supplied to the community for drinking and cooking.

We had our bit of controversial dialogue when the talk turned to water pollution on the account of religious practices. A lot of us throw idols, offerings, flowers, food (*cough* dead bodies *cough*) in our rivers and lakes. Spelling out the obvious, it is very, very bad for the environment and in turn, for us. Traditions are tied to faith, not practices and by modifying the latter to make them less damaging, we are only protecting the planet we call our Mother. Don’t follow the mandate blindly. Question the real purpose behind it all and follow your belief without damaging your own surroundings.

The Rs 50 study table

“On many of my trips to the far-flung villages, i noticed that the schools did not have tables/desks for the children”, recalls Mr Khatri. “Children kept their books on the ground and hunched over it to write, back completely bent over the book. It is unimaginable how uncomfortable that would be and what damage that would do to a child’s posture in the long term.”

He came back with a strong urge to do something about it. Wooden tables/desks would be out of questions since the schools would have neither the budget nor the space for them. What could possibly be as strong as wood and as cheap as plastic?

Amazingly, the answer came from nature itself. In partnership with bangalore based eco solutions firm Vaspar, iSambhav created a sturdy, compact and portable little desk made entirely out of cardboard and based on the honeycomb design beehives! It is incredibly lightweight and folds into a regular register-shape, so easy to store and carry! When opened, it becomes a desk one can keep on his/her lap. It is strong as hell – It can withstand a weight of upto 80-90 kgs without any damage. Best part is, it only costs Rs 50! Here’s how it looks. In case you want to order some, you can reach out to Mr Arun at Vaspar on 9900029721.

Solar Cookers

The highlight of the day was, making DIY solar cookers! Made from simple raw materials, easily available in and around our homes, the cooker can be as good as an LPG stove on a sunny day. We made one during the session and cooked delicious maggi too! It is incredibly simple to make and is a boon for families who cannot afford LPG. Learn here how to make one and pass on the manual to someone who might need it.

The little things we can do

Tiny changes in our lifestyle can go a long way in improving our ecosystem and maybe even elongating mankind’s life on this planet.

Here are some you must try –

When you have guests over, don’t offer full glasses of water which will eventually go to waste. Ask them how much they want.

Maybe cut down on the introspection under the running shower? Bathing under a shower for 30 mins is surely relaxing for us. But think about this when you do that – Rajasthan. 1 litre per person. Water in a vault. Yeah. Turn that shower off.

We have a habit of washing utensils under a running faucet. A lot of water can be saved if we just made the effort of turning the tap off every few seconds.

When visiting your native village, take solar cookers as gifts for the family or the VASPAR desks as gifts for their children. They sure will last longer than clothes and will be be much more useful than jewelry.

This diwali, give away new solar cookers and cardboard desks to your maids/society staff along with your old clothes.

Don’t use disposable cups/plates made of paper. It takes 200-250 litre to make EACH one of those. Carry a plastic/steel bottle with you. For gatherings, keep plastic glasses. (Hire someone for washing. Create a job for the economy. :p)

Don’t throw away something that is still usable. Give it to someone who needs it. to quote Mr Khatri – “Use something till you are happy with it. Then give it to someone who will be happy with it.”

Next time your are at a wedding, eyeing the sumptuous feast, or out for a buffet lunch, eat for your stomach and not for the eyes. In our excitement of a good meal, we take more than we intend to eat. Taking smaller portions will reduce food wastage. Remember, the food left in the dustbin cannot be given away, but that in the dish can be. Another quotable quote from Mr Khatri – “Waste is just wealth in the wrong place.”

Pause and think. What are the practices that are wasting water/food/resources? How can they be modified to stop wastage? Nobody, mortal or god, would be displeased with you for doing your bit for the planet.

At Tamahar, we keep organizing sessions with parents as well as teachers to educate them on the generic medical issues as well as typical symptoms seen in children with brain damage.

One such session was taken by Mrs Vaishali Pai on Epilepsy, explaining us what it exactly is and how can one identify whether the fits/jerks are epileptic or not. Here’s a brief transcript of the discussion. Hope this helps you and answers your questions! In case you want to know more, write to us on facebook or email on shivani.tamahar@gmail.com.

What is Epilepsy?

Epilepsy is termed as weakness in nerves, where the wiring of nerves is interconnected. This is a disorder characterized by recurring seizures(Also known as Seizure disorder).

A seizure is a brief, temporary disturbance in(or abnormal) the electrical activity in the brain. Seizure is a symptom of Epilepsy, not a cause. Anything that injures brain can cause seizures.

Anyone can get epilepsy at anytime. 50% of epileptic patients develop seizures by the age of 25. About 1% of population develops Epilepsy and the risk is higher in individuals with Mental Retardation, Alzheimer’s or Those who have had a stroke.

How is it caused?

Brain is the source of Epilepsy. For all functions—like feeling, seeing, thinking etc – moving muscles depend on the electrical signals passed between nerve cells in the brain. A seizure occurs when too many nerve cells in the brain “fire” too quickly causing an “electrical storm”.

Seizures can also be seen in the cases of drug or alcohol abuse, where extreme dehydration happens sometimes. Apart from that Hypoglycemia (in diabetes) can also lead to seizure-like symptoms like giddiness, shivering of hands and legs. Neither of these seizures is epileptic.

In 70% of cases, exact cause of seizures remain unknown. In the rest 30%, most common causes are:

Head Trauma

Brain Tumour and Stroke

Infections of Brain tissue

Lead Poisoning

Hereditary

Prenatal disturbance of Brain development

Hypoxia at birth

Fever / Infection

Drug/alcohol withdrawal

Poisoning/Overdose

Hypoglycemia

Brain neoplasms

Psychiatric disorders

Eclampsia

Hypocalcemia

What are its typical symptoms?

In epilepsy, usually the seizures are recurring. Symptoms of epileptic seizures are :

Partial/Focal Seizure- Involves only part of the brain (focussed/focal), may or may not include loss of consciousness, symptoms relate to affected part of brain. This has 2 subtypes –

Simple partial

Complex partial

Hysterical – As the name suggest, this type of seizure is a kind of hysteria. It usually happens in front of an audience/group of people. The body movements of the personal are asymmetrical or not purposeful. He/she does not fall down, but hits head on a surface and bites tongue. He/she recalls things said or done during the seizure. Incontinence is rare though. Such incidents are more likely to happen after a interpersonal stress.

Triggers of seizures

Missed medication is usually the #1 reason

Stress/anxiety

Hormonal changes

Dehydration

Lack of sleep/extreme fatigue

Photosensitivity

Drug/alcohol abuse; drug interactions

Do’s and Don’ts of dealing with seizures

Proper treatment is the only treatment of Epilepsy. However, if you are in a situation where you cannot get immediate medical help and a seizure happens, follow these general guidelines to avoid it from getting really bad.

Some people drool during seizures, hence all the saliva comes out instead of going inside the body. This may happen due to the position the person is in. Ensure that this does not happen and the person swallows the saliva. Lack of saliva can potentially cause higher density of seizures. Provide them with a glass of juice or water to help with this.

2. Hypoglycemia/starving also tends to induce Seizures. When this happens, just tell the person to lie down on one side.

3. When a patient is in the middle of a seizure –

Do NOT restrain

Do NOT put anything in mouth

4. Once the seizure has stopped

Open/Clear/Maintain airway

Roll patient onto side protecting head

Treatment

Medication

Surgery when trigger zones can be localized

Other: Vagal stimulation for partial seizures when medicines don’t work

Life style modifications, specially in children and adolescents

Counseling

In case of Status Epilepticus –

A condition when consciousness does not return between seizures for more than 30 min. This state may be life-threatening with the development of pyrexia, deepening coma, circulatory collapse. Death occurs in 5-10%. Status epilepticus may occur with frontal lobe lesions (incl. strokes), following head injury, on reducing drug therapy or non compliance with alcohol withdrawal,drug intoxication, metabolic disturbances or during pregnancy. Take the patient to a hospital asap.

Other types of jerks

Jerks during sleep – These are not epileptic. Jerks while sleeping is an indication of brain hyper-activity.

Jerks in children while bathing – Non-epileptic. No need to worry as such jerks are just brain nerve wiring quickly to respond to the temparature of water.

As Indians, we have the “Wait-n-watch” germ in our DNA. While this works out well enough in case of general illnesses, this can prove to be a serious deterrent when it comes to development delays in children.

The earlier we reach a diagnosis, earlier we can start containing the damage. This exercise of treating kids at an early stage (infancy or toddler) is called Early Intervention and it is often the make-or-break factor in the rehabilitation of kids.

Here’s why –

Emotional development of the person starts soon after birth. Any interruptions in regular development may disrupt emotional development leading to developmental delay.

Our brain, which is the most important seat of control, continues to develop for up to 2 years post birth. All experiences that a young infant gets are important in providing smooth development of this immature brain.

The earlier we diagnose possible disruption of brain development, the faster we can start procedures to prevent increasing damage of the immature brain and also put in place processes that can improve brain functioning.

This intervention needs to be done systematically simply because what typically developing children experience naturally, learning from their and others experiences, children with special needs need to be provided with special experiences that would mimic these learning’s.

It helps to have the child medically diagnosed starting with a paediatric neurologist. There are many investigations like MRI, EEG, etc that may be necessary for a doctor to get better understanding.

It is now known that only 5-10% of the total population of children with special needs have Cerebral Palsy. It helps to also get a genetic assessment by a Geneticist as it is now confirmed that the incidence of rare diseases in India is almost 1 in 5000.

We urge all parents, whose kids are experiencing delays, to reach out and get help for their kid as soon as possible. See a doctor, or get in touch with Tamahar.

People who are not used to seeing a child with special needs often find the kid strange and feel uncomfortable in the child’s presence. Funny thing is, the child does not feel that way! He/she does not know the same methods of communication that you do.

We’re the “normal” ones, aren’t we? Is it normal to expect a child with brain damage to comply to your view of proper etiquette or social behavior? Why don’t we, for once, instead of expecting them to catch up with our standards, try and understand how we can talk in a way familiar to the kids and enable them to respond to us?

Use these pointers to strike up that conversation –

Do not speak loudly unless you know for a fact that the child has difficulty hearing.

Touch is an important way for these kids to express their emotions and judge yours. Let them touch your hand or face and do the same thing back, if you think that would help you get the meaning across.

Use actions, gestures, words, and signs to convey what you mean to the child.

Use these pointers consistently. The child will slowly come to associate the action to the meaning.

Give the child time to process what is being said.

Do not repeat your commands, suggestions, questions more than twice at a time.

Prompt answers when you know that the child has understood, again use the prompts only once or twice at a time. Physically guide the child with the answer – how to say/do it.

Develop a comfortable communication system, generalize this system with other family members and friend. Or, learn the existing practices the family uses to communicate with the child.

Believe that the child is much more than the diagnosis given and capable of reaching for the stars with you all by his/her side!

We at Tamahar firmly believe that when it comes to the treatment and rehab process of children with special needs, the involvement and enthusiasm of parents plays a vital role in speeding up the progress of the child.

Patients Engage, an online medical journal, recently did an interview with our founder Mrs Vaishali Pai to talk about why we hold this belief and what is the philosophy behind all we do. It’s a great informative piece and is probably one of the best representations of all we do and stand for!

EMPOWERED FAMILIES ENCOURAGE BETTER DEVELOPMENT IN THE CHILD

December 02, 2016

Tamahar not only tries to develop the children with various activities, it also brings the family, the primary caregivers, into its fold to help them grow and learn with the children. Vaishali Pai is a visionary and an experienced occupational therapist who set up the Tamahar Trust in 2009 to help children with special needs find their own little spaces in this world. She shares how she would like Tamahar to reach out to more children in future.

Tell us briefly the thoughts behind forming Tamahar.

Travelling to work 20 kms away in a crowded bus every day I could see families with children with disabilities struggling to travel long distances to get to the few centres offering therapy services. By the time they reached the centre, both the child and parents would be tired. Some of them would spend an entire day in this pursuit. People who had hardly enough money to eat had to spend it on bus tickets. Some children were heavy, carrying them was tough. I realised there was a need to have centres all over the city. In a crowded city like Bangalore, we need one every 5-7 kms. The need is that high. Every intervention that is needed, if can be provided under one roof was another idea, parents then don’t need to run from one place to another looking for professionals and services. This was the main reason why Tamahar started.

Tamahar doesn’t just educate children with physical and mental disabilities, but also believes in supporting their families. Could you please explain?

Like a regular school going child who comes home from school and shares experiences with parents, our children cannot do so. Unfortunately, our families (parents) are more in need of knowing exactly what is happening at their schools or therapy centres. We, at Tamahar, believe that parents are primary therapists, they continue with the therapy programme at home, ensuring a 24-hour intervention. This is possible if therapy techniques and teaching techniques are shared with the family and they are encouraged to continue working with the child at home. It is compulsory for our parents to be part of the programme where they are given both theory and practical training on an ongoing basis. Other programmes for the parents include: Support groups for mothers and fathers separately. This is a safe place where parents come and share their fears, anxieties, needs, experiences under the guidance of a clinical psychologist.

We also have a Respite Care programme. Taking care of a child with special needs is a 24/7 job, there is no respite. By providing a safe place to keep the child for short periods like 3 hours or 6 hours, the parents know their child is well taken care of and they are free to pursue their own activities. For the respite care programme, we have tied up with another organisation which offers these services.

You believe in not just caring for the children, but organising special programmes for the mothers, siblings and other relatives. Is it a new thing in caring for children with disabilities? And how do you go about planning it?

For us a child with special needs cannot be separated from the family and given interventions. Every individual from the family undergoes problems if there is a young child to take care of all day, all year. Through programmes that either enhance their knowledge about special needs, or relieve them of stress, we ensure as relaxed an atmosphere as possible. Harmony in the family encourages better development in the child with special needs. Mothers get together once a week. With a clinical psychologist guiding the sessions, mothers are encouraged to share their feelings, learn different skills and vent out their fears and frustrations. They have special dress-up days, movie days as well as other outings. Fathers have a similar session once a month. They get together to also discuss future plans, programmes etc. Siblings come together once a year during the summer camp time. Special programmes are arranged for recreation or to ensure they get an opportunity to share their issues in a safe environment. Thrice a year we also have full day training for both parents where lectures are organised on various topics related to brain damage and development. Apart from this, parents get regular practical and theory classes on an ongoing basis throughout the year.

“Parents are the best therapists once they understand what their children need.”: Can you please explain this?

In developmental delay, in which a child’s development gets delayed due to various reasons, one of them being that the child’s brain is damaged and hence the brain is not equipped to guide his growth, therapy cannot be restricted for a few hours a day, it has to be an ongoing programme. Who better to do this than the family which spends all the time with the child. Instinctively, the parents generally know what is right and what is wrong for the child, and if we combine that with some technical knowledge, then the child gets continued support at home too. We teach best positions for children to be put in, feeding skills, how to teach children to be independent in self-care, and, of course, specific techniques to encourage regular development.

What are the various kinds of therapies that you extend to children with special needs?

Typically, new born children start interacting and learning from the immediate environment soon after birth. As they grow, their movement in the surroundings, their ability to observe teaches them how to move, how to improve and preserve function. Simultaneously they also get the required emotional maturity. Children learn to speak, move, use their hands for working, and think simultaneously. Children who suffer brain damage do not get this opportunity.

In Tamahar we provide opportunities for them to work on all their functions together. We have developed a methodology using this concept. We provide that in a one-on-one situation, where one interventionist works with one child for one hour. In this we combine Occupational Therapy techniques, Speech Therapy techniques and Special Education. They have one and half hours of social activities after this. This is our Pre-School programme, a programme that prepares children to start learning academics. This continues till the children master skills of a 5-year old, after which the children get transferred to our school where we teach functional academics – English, Maths, Kannada (or Hindi), EVS along with extracurricular activities like gardening, out-door and in-door games, Yoga, Music, Dance, Art and Craft.

Yoga therapy, Music Therapy are given to all children twice a week. Recreation Classes (Dance and Fun-Art) are twice a month, Sports coaching is held once a month. For all the children who need it, Physio Therapy is given two or three times a week as necessary. Children are also taken out regularly for field visits, e.g., to a hospital, the Metro rail, Supermarkets, etc.

You are also committed to addressing children from low income groups. Would you like to tell us about it?

Poverty and disability grow together, it is a vicious cycle. Unfortunately, families from low income groups do not get the necessary intervention for their children, very often due to financial constraints. Tamahar is committed to providing quality services to all children irrespective of their socio-economic status, religion, caste, creed. All children get what they need. We have a number of programmes for both the children and their families and the services are the same for both rich and poor families. We want to have our presence in geographical locations in both cities and villages where such facilities are not easily available.

Tell us a little about your team.

We have special educators, physiotherapists, clinical psychologists, Yoga therapists, Music therapists, teacher trainees. We work in a sector where professionals are difficult to source out, especially since the need is also very large. At Tamahar, we offer training to women who like working with children (whether or not they are trained in regular development or special needs). This gives us increased manpower, and it provides jobs to women. We are proud of our women empowerment programme!

Do you think Tamahar stands apart from other organisations of its ilk? If so, how and why?

The reasons why I think Tamahar stands apart are many:

Parents are essential: parents are not bystanders who observe therapies, they have to participate in the programme hands-on. This is compulsory at Tamahar. Other places do not encourage this.

Developmental age and growth is important: Most schools admit children according to their chronological age and also start their training according to those ages. This creates a difference in their understanding and ability and what they are being taught. We start working with children according to their inherent skills and develop them to their chronological skills.

Emotional development is important: From birth, children start a journey on emotional development. This prepares them for all the trials of later life. Our children do not get that opportunity; at Tamahar we ensure that situations help in this emotional growth. Well rounded personalities, giving extracurricular is how we ensure this emotional development. Most schools focus on the necessity of the children to function, we believe that our children need to enjoy life, be independent, and live a life of dignity, not with pity from others, hence we provide basic therapies like Occupational Therapy, Physiotherapy, Speech Therapy etc., but also give them recreational activities, sports training etc..

What are your focus areas?

We work with children who have developmental delay due to abnormal brain functioning, in normal parlance it would mean Cerebral Palsy, Mental Retardation, Autism, Chromosomal or Genetic conditions, etc. Basically, these are children who do not get the chance to have a normally functioning brain due to some medical pathology. We work with children from 0 (birth) onwards and continue working with them, providing them with services and programmes as per their developmental growth.

Can you share a couple of success stories with us?

Karthik came to us as an 8-year-old, having never gone to school. Not being able to talk, with no ideas about play, he spent his time punching buttons on his mother’s phone, and rolling on the ground playing with his saliva. During the first week Karthik managed to stay at the centre for a maximum of 10 minutes, which he spent rolling on the ground and playing with his spit. We persisted in our efforts and before the month was over, Karthik started staying for 30 minutes enjoying playing some simple games and understood what toys meant! Today, Karthik is able to work on toys that are more complex and stays for 45 minutes. He has started saying “amma”, “appa”, etc indicating some of his needs with words. He is now eager to start mixing with his peers! Karthik has not been diagnosed yet.

Another example is of 5-year-old Rajshekhar who has epilepsy. When he first visited us during the January camp, he was unable to keep his eyes open, could not walk by himself, was crying continuously. On questioning the mother, we realised that he was not being given his medications to control his fits. We counselled the mother on the importance of medical treatment, which she followed diligently. Today, Rajshekhar regularly attends sessions, and is full of energy. He loves to run around and play games. He has started saying a few words and is a happy bubbly youngster!

For 6-year-old naughty-faced Shreyas, challenges have been his companion since birth. On the 3rd day of life he had his first taste of epilepsy, followed by delayed milestones and unsteady gait. As is the set practice, a detailed assessment was done at Tamahar along with many visits to meet specialists at different hospitals. His diagnosis came back as Lennox Gastaut Syndrome, a difficult to treat type of epilepsy. A therapy plan to improve Shreyas’ quality of life was started along with medications and brain surgery. Shreyas developed an instant liking to one-on-one interactions with play/fun activities like Circle time and Rhyme time. He also adapted to Yoga and this had a profound impact on his physical strength.

A child who progressed rapidly: this child came when he was 8. Developmentally he was 2 yrs old. With brain damaged children, developmental age will not progress much from there in ordinary circumstances. Within 3 years, he went to developmental age of 5, and started basic academics. Earlier he didn’t understand what play, books or toys meant. Now he goes to learn badminton on a proper court. He writes alphabets, is eager to understand stories from story books.